diagnosed approx a month ago, any advice?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

diagnosed approx a month ago, any advice?

Postby saveferris54 » Wed Mar 24, 2010 8:37 pm

Hey, i have just recently been diagnosed with RRMS. I'm 21 years old, I'm fairly healthy other then being a smoker, a little bit overweight and the obvious.

I was thrown a whole heap of brochures when the neurologist told me and told to pick a form of medication.

i did some research and chose Copaxone as it seems to have less side effects.

Just got the balls to fill my prescription today and now trying to organise someone to show me how to use it.

anyway I'm really interested in using natural therapies and remedies and just wondered if anyone had any advice on things they've done which have worked.
User avatar
saveferris54
Newbie
 
Posts: 2
Joined: Tue Mar 23, 2010 4:00 pm

Advertisement

Postby tzootsi » Thu Mar 25, 2010 6:43 am

There's a lot you can do:
- Quit smoking (no brainer)
- Consider diet changes. This can have a major affect on your disease course. Go to the direct-ms website for lots of info. Also buy the 'MS Recovery Diet' book.
- Consider taking vitamin D, fish oil, magnesium, and a multi vitamin. Again direct-ms has lots on supplements.
- Look into LDN (low dose naltrexone). This is a mild prescription drug that has helped many MS people. You can take LDN with Copaxone.
Go here for starters - http://www.lowdosenaltrexone.org/.
- Perhaps the biggest - look into CCSVI.

My wife dx'd with ms 3 years ago, and has been following the diet and taking LDN, and has remained stable. She will be getting the CCSVI procedure in a few weeks.
User avatar
tzootsi
Family Elder
 
Posts: 370
Joined: Sun Nov 22, 2009 4:00 pm

Postby Villagemaid » Thu Mar 25, 2010 3:02 pm

I agree with everything tzootsie said.........altho I am unfamiliar with low dose Naltrexone - I will have to research that!

The Best Bet Diet on www.direct-ms.org is great.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Postby chrishasms » Thu Mar 25, 2010 8:21 pm

You have got to quit smoking. There are huge studies showing people who smoke have a faster progression of disease so if you are smoking you are literally playing Russian roulette.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Re: diagnosed approx a month ago, any advice?

Postby NHE » Thu Mar 25, 2010 10:53 pm

chrishasms wrote:You have got to quit smoking. There are huge studies showing people who smoke have a faster progression of disease so if you are smoking you are literally playing Russian roulette.


<rant> It's more like Russian roulette with a semiautomatic with only one bullet in the clip. :wink: Cigarettes are poison and nicotine is a highly addictive drug. I know many people who have tried to quit, who really want to quit, but have failed every time. One person I know has successfully quit both heroin and nicotine. He stated that quitting heroin was easier and smoking was a much more insidious addiction. I also had an uncle that died from smoking. Lastly, think of all the money you'll be saving. It's nice that you've volunteered to pay an unfair share of the tax burden, but we would rather see you live a longer, healthier life. </rant>
User avatar
NHE
Volunteer Moderator
 
Posts: 3333
Joined: Sat Nov 20, 2004 4:00 pm

Postby saveferris54 » Fri Mar 26, 2010 4:36 am

well have had to stop smoking anyways coz ive just had dental implant surgery.

yay im so blessed lol
User avatar
saveferris54
Newbie
 
Posts: 2
Joined: Tue Mar 23, 2010 4:00 pm

Postby adamt » Fri Mar 26, 2010 7:39 am

Saveferris,

DO not take any of these meds untill you have tried LDN - Low dose naltrexone first.

Im 24, and started LDN (2mg) 2 years ago, and since starting it have not got ANY worse.
I am in the same state/mobility as i was 2 years ago,
- it also slightly improved my walking strength/balance but only slightly.

Those other expensive and uncomfortable meds cant do this!

LDN is just one pill you take before going to bed with NO side effects beside the first week of taking LDN its harder to fall asleep, THATS IT!

I cant recommen LDN strongly enough, you do not get any worse when you take LDN, and it only costs me $40/£25 per month!

Good luck
Last edited by adamt on Fri Mar 26, 2010 10:12 am, edited 1 time in total.
User avatar
adamt
Family Elder
 
Posts: 303
Joined: Thu Mar 11, 2010 4:00 pm

Postby Villagemaid » Fri Mar 26, 2010 8:06 am

I have never heard of LDN until this forum......I will have to google it and do some research!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Postby euphoniaa » Fri Mar 26, 2010 9:04 am

Villagemaid wrote:I have never heard of LDN until this forum......I will have to google it and do some research!


There's a whole subforum on LDN (Low-Dose Naltrexone) here at ThisIsMS:

http://www.thisisms.com/forum-10.html

Here's a link to the thread where I posted my own LDN experience there and a quote:
http://www.thisisms.com/ftopict-8609.html

From Me:

I thought LDN was GREAT for my innumerable symptoms. And...it seemed to promote healing in many non-MS ways. But...the main problem was that my slight walking difficulties continued to progress slooowly through the entire year, at the same speed as before LDN, and I ended up using a cane about halfway through it.

It's difficult to evaluate that kind of success/failure... I kept taking LDN until my PCP at the time decided to freak out about it like my other ones had and fired me as a patient with a certified letter. I'd try it again - if only for symptom relief.


I'll say a hello to all newcomers to MS and wish you well, but I have no med advice. I seem to be doing as well on diet/exercise/rest/humor as anyone who's on meds. :D

I do have some hope for CCSVI treatment once the dust settles and it makes its way to my area of the U.S. (no signs of that yet).

Good health and good choices to all.
-
-
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Family Elder
 
Posts: 687
Joined: Sat Jul 15, 2006 3:00 pm
Location: midwest U.S.

Postby Enya » Fri Mar 26, 2010 9:27 am

I agree with EVERYTHING Tzootsi wrote.
Smoking restricts your blood flow also.
Be active and stay positive javascript:emoticon(':D')
User avatar
Enya
Newbie
 
Posts: 6
Joined: Mon Nov 23, 2009 4:00 pm

Postby Villagemaid » Fri Mar 26, 2010 9:33 am

Euphoniaa,

Thanks, I'll check it out. I am not on any meds (except prozac :P )

I try to cut down on the dairy and red meat, up the fish quotient, vitamins.....the only thing I need to do is exercise more...it's kind of an on-and-off thing for me. Mostly "laziness" as my hubby states.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Postby adamt » Fri Mar 26, 2010 10:17 am

one thing i forgot to say about LDN is you must start slowly say from 1mg and increase the dosage say to 2mg after 2 weeks , etc.

I started on 3mg and after a few weeks went up to 3.7mg and my body coudnt handle it so went down to 3mg and it was still not helping my mobility, so have stayed at 2mg and this is the dose for me, as it has completely stopped disease progression.

Everyones optimum dose is different, so when starting LDN start at a low dose like 1 or 2mg and slowly build up to 3mg or 4.5mg.
User avatar
adamt
Family Elder
 
Posts: 303
Joined: Thu Mar 11, 2010 4:00 pm


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service